Our little Christmas

Hello everyone. Well although many of you may consider me to be a super mom, this mama crashed yesterday. 

Let first get through the yucky part of it all, and then I want to share with you what a wonderful non-traditional Christmas I was able to spend with my family.

So if you haven’t figured out by now Emerson is still in the hospital. He has completed the second cycle of chemo, which had a total of 3 medications via his semi-permanent line, for 5 days. This also included twice/week spinal taps (fluid being removed for testing, along with infusion of three chemos). Those infusions still occurr, twice a week, as the involvement in the brain had not quite resolved from first cycle. 

Well this beginning this past weekend it was like we hit a brick wall

✅no pee-pee diaper

  *started on fluids, which at this point has caused 3rd spacing (rather than the blood vessels, enters non-functional space inbetween cells). It is day #6, and finally we got good diapers. It got so bad that they had to give Mac medicine to help him pee. Believe me I was like ready to give orders:

  *bladder scan, in/out catheter, labs to check kidney function 

I mean I had residents coming in multiple times, until finally something was done.

How would you like to not use the bathroom for close to 8 hours

✋🏾🦶🏾are like sausages!

✅vomiting: I have never quite experience vomit like this. I mean all day long. Despite him having 3 medications to help, he still is nauseated. Initially it was yellow, and mostly milky. It changed to green, but not milk based. At this time it’s a yellow/green. Mostly mucous, thick! 

✅not eating! What that means? Well my poor Emerson hasn’t really latched on to be breastfed since Saturday. Initially it was due in part to the vomiting; but now it’s because his mucousa layer, from mouth down, looks like acid has been poured on it. So even if I could get him to latch his poor mouth hurts.

  *thus adds to the vomiting, because he doesn’t want to swallow his own spit. 

✅g-tube feed attempts. We have tried with several combos to get a good formulation to feed Mac. At this point despite the vomiting we still do feeds. However last night he was started on TPN (total parentral nutrition). Basically he will be getting fed with a very distinguished count of calories etc, though his semi-permanent line. 

✅ pain meds. Up until now we hadn’t really been doing anything for pain. Mac would get Tylenol for the occasional fever he had (no source or infection thank God). Otherwise we were trying to control the vomiting primarily. At this point though you could imagine if you were vomiting as much having something to help with the discomfort you would ask for it. Morphine! Can’t believe I’m saying it but yes we are using it. Then again I’m sure I would have asked for a morphine drip!

I thought I wasn’t getting much sleep for the past month or so, let alone most of Emerson life. But with this little guy having emesis the way he has I’ve been afraid of him aspirating (basically food/liquid getting into his lungs). I’ve basically been hovering next to him. Last night I actually fell asleep, without having to be told to, due to the fatigue. Thank God my mom was there because Mac has a big emesis and she caught it. Funniest part is that my mother told me that the chair I was sleeping in (recliner), well my feet were up, and I was next to the crib. I was sleeping so hard that I pinned the nurse in between the chair and crib and kicked my shoes off. Thank God the nurses have a sense of humor, and they sympathize with a tired mother. 

 I have a confession to make. I am trying to make better effort to physically remove myself from the room and spend time with my oldest. So I decided based on the gloomy weather to take the  two to a local play area inside our mall.My heart is split into three. I mean I want to be with Emerson, although there is not much I can do outside of comforting him. Then my older two are so full of energy that even in the thrill of having fun I feel more overwhelmed. I think it’s more of a feeling of inadequacy at this time. I mean I am being told that my oldest need me as well, and I realize that they obviously don’t understand what’s going on, so for their mom to be away for such a long time it’s hard for them. Then I look at Mac and I will lean in to kiss him and his hand lands on my face.  The anguish and pain he is suffering I would in a moment relinquish from him if I could.  I think I’m suffering from separation anxiety!

Last night was a breaking point. I think the culmination of lack of sleep, anxiety with my oldest, and the sight of Mac suffering. Tears flowed! I mean it felt good. 😭I mean I always have told my patients the following God’s have you tear ducts, so use them.’ No matter what the emotion is, just let them go. My kids are rock stars! From getting their blood tested to see what sort of match they are...not 1 tear! To getting chemo and having his mouth look like razors have been chewed. I’m grateful for each one of them: oh how I love them so! 🥰

Father God let me enjoy my kids. It’s been difficult for me to do so at this time. I’m almost split in two Lord. I know that you desire for me to enjoy all of my children, so when given opportunities please allow the Holy Spirit to intervene and not allow for me to miss the moments. Amen

My little crew!